When health changes everything: The disruptive side of identity shifts in people with CF

Abstract

Cystic fibrosis (CF) is a severe genetic disorder historically associated with low life expectancy. The introduction of CF transmembrane conductance regulator (CFTR) modulator drugs like Trikafta has dramatically improved health outcomes for many people with CF (pwCF), shifting their lived experiences in unexpected ways. This qualitative study explores the psychological and social consequences of such improvements, focusing specifically on identity disruption and emotional adaptation. Utilizing a phenomenological approach, in-depth interviews were conducted with CF patients who had used Trikafta for at least 2 years, alongside an analysis of publicly available blog narratives. The findings reveal two central themes: identity disruption and ambivalent loss. Participants described profound challenges in adjusting to their new health status, including difficulties in redefining their identity after years of viewing themselves as chronically ill. Additionally, they reported a paradoxical sense of loss, grieving aspects of their previous illness experience, such as a sense of urgency in life decisions and strong connections within the CF community. While participants also shared hopeful and forward-looking narratives, this study centers on the less-explored emotional complexities that emerge when long-standing illness-based identities are disrupted. The findings underscore the need for comprehensive psychological support systems to help PwCF process identity shifts and sustain a sense of continuity in their lives.